Who had GB attacks after GB removal, and had them go away after body adjusts to no gb

Who had GB attacks after GB removal, and had them go away after body adjusts to no gb

I hope my posts aren't getting redundant (and if they are, I apologize), but I've been doing a lot of reading online, and it seems that the most common problem people experience after gall bladder removal is diarrhea, usually after eating a meal that's high in fat.

I had my GB removed on 6/24/08. Ultrasound showed no gallstones. Hida scan showed an ejection fraction of 16%. The CCK injection during the Hida scan did precipitate an attack, which I hear isn't uncommon. I may have had smaller stones or sludge in my GB, but won't know for sure until I see my surgeon on 7/3. Stones smaller than 3mm don't show up on US.

My symptoms pre-surgery were severe pains in the back with really bad indigestion. I never had any nausea or vomiting, and I never had a ton of pain in the gall bladder area. It was the back pain that had me writhing in pain.

A few days after my surgery, I did something REALLY stupid and ate a small slice of Tombstone pizza. I KNOW it was dumb, but I was starved for some flavor. The last decent meal I had was at the end of April at a birthday dinner. So yeah, I caved and had a slice of pizza. Sure enough, I had some pains in my back and indigestion. It only lasted for about 10 minutes, and wasn't as severe as the attacks pre-surgery. Still, it scared the crap out of me.

I've been eating a lot of muffins over the last 2 months. My husband bought me a different kind, and for some reason, eating 2 muffins (of the new brand he bought) sent me into an attack last night. This one lasted for a good 30 minutes. I had the pain in the back and the indigestion. This is very disheartening.

What this leads me to worry about is Sphincter of Oddi problems. I have read loads of stories of people that had their gall bladder removed, and suffered with diarrhea, but I'm having a hard time finding people that had GB attacks AFTER surgery, and then had them STOP after their body adjusted to not having a GB. I need to hear that people have experienced this, and that it DID subside. I don't want to deal with Sphincter of Oddi problems. I've read that many doctors don't put too much stock into that, and that it's often difficult to get it treated. I'm only 104lbs, so I can't afford to lose weight!

So my question is, how many of you experienced these symptoms (pain in the back, severe indigestion, etc) after your surgery, only to have them subside once your body adjusted to having no GB?

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

I'm going to repeat myself one more time and then I'm going to keep quiet. Quit doing this to yourself. The bile duct is revolting and you will end up with permanent damage if you don't stop eating like that. The pain is from the duct trying to do something that it is not capable of yet. Think of a broken arm that has been in a cast for 8 weeks. Then the cast comes off and you immediately start back lifting weights at the point you were before the break. The arm pain will be unbearable. That is what you are doing to yourself. If you keep it up, the bile duct will never learn to take over and what you are experiencing now will be there the remainder of your life. The choice is up to you.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

Hi Nikki & Titchou! I have to say Titchou, you need to slap me, too because I thought I was fine up until 2 weeks ago and Sunday night I swore I was having a gall bladder attack 10 months post-op. I can't even eat too much salad anymore--it goes right through me. I had a hysterectomy at age 40, but this is the REAL change of life! If I had vomited, I would have felt better. When I end up back on an antidepressant, it gives me an appetite like a horse--it doesn't matter which one it is--and of course I think I can eat everything and I'm fine. So wrong! Like Nikki said, the back pain is worse than childbirth. I don't know if the hives I'm getting are connected with this, but I'm very mindful today about what I've eaten and so far no fats and no hives. The diarrhea remains and acidy stomach are still with me, but I have antacids and Pepcid as needed. May this be a lesson to us all! Thanks and God bless--Hopeto

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

I've lived on muffins for 2 months. That's what's basically sustained me nutritionally since the end of April. I had no idea that this different brand of muffins would cause an attack. I ate them thinking that I would tolerate them just as I did the other muffins. I wasn't trying to push my luck. Yeah, I did push it with that one slice of pizza that I ate, and I've already admitted that it was really DUMB to do that. After 2 months of nothing but white food, it gets a little aggravating. I'm dying for something with some flavor to it. Even though that pizza caused me 10 minutes of panic, I don't regret eating it b/c it was the best slice of pizza I've ever put into my mouth. But, that doesn't mean I'm going to try THAT again anytime soon.

Today, I've been a good girl and had 1 slice of plain toast, one bowl of Cheerios (which is a "safe" food for me), and a few peas (like 10 of them - not even a whole spoonful). I need to look up a gall bladder diet b/c I cannot keep living like this. The thought of having to eat like this for 2-3 more months is terrifying. It's especially disheartening when some people have biliary dyskinesia for years and years after GB removal, and nothing they do helps it and no one has any answers. Sorry if I sound negative, but it's getting very difficult to keep up a positive attitude. Everyone has their limits, and I think I've just about reached mine.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

Hopeto,

I'm sorry to hear you're still having such a hard time. It really sucks to be sitting there starving, WANTING to eat, watching other people eat, SMELLING the food, and knowing that if you eat this or that, you're gonna pay the price later. Sometimes I don't know which is worse - the hunger and craving for real food with flavor, OR the pain that comes with eating a no-no food. It's entirely possible, and not at all "out there" to get so hungry and so starved for flavor that you go and eat a no-no food. I did it, and I have made a vow not to do it again. Hopefully I can hold off for at LEAST another month before I try to test my system again. But next time, I won't test it with an entire slice of pizza (no matter HOW small it is)! The plan is to slowly introduce fats.

What does your doc say about these back pains and the hives?

Last edited by moderator4; 07-01-2008 at 10:36 PM.
Reason: Quote is unnecessary.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

i too have had what feels like mini gb attacks since i had my gb removed. i had mine removed dec 07. i will say however that they are becoming less frequent although not less painful. i also suffer from stomach cramps that i didn't have before. i have just been discharged by the surgeon having been told that nothing mechanical is wrong that my problem is functional that i'll just have to live with it. here in the uk we are not given advice about diet following gb removal nor have we got the option of finding another surgeon unless the gp refers you to another one, which is unlikely as my gp has the same opinion as the last surgeon. i may change my gp however.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

I haven't had any attacks since my surgery but did want to tell you about my SOD experience. The dr's that don't believe it exists is because they have NO experience with it.

I was having really bad pain, mainly right under my right breast going around to my back. Like it was in a vise grip, a really tight grip. Almost to the point of feeling like a horse had kicked me. The dr looked at me funny and sent me to have a upperscope thing done. He tells me there's no uclers, no infections but a little bit of damage from heartburn. Umm, I hadn't had but occasional heartburn which tums took care of. Anyways, I woke up from the scope crying loudly in pain. Again like I was being squeezed in a tight grip. Pain meds were given and it eased. Calls me at home as says everything looks good, its IBS.

Now when I hung up, I was thinking IBS, is this guy for real? I've never had any of the signs of IBS, but he says waking up in pain from the scope test is an indication of it. Ummm....

So next test is an US, again normal, then a CT again normal. All the while my pain is getting worse, whether I eat or not. He wouldn't give me anything for the pain at this point. Finally he orders a bilary scan, and BAM we have a reason for the pain.

My ejection rate was 14% but keep in mind, my pain isn't the typical gallbladder type. Even the guy doing the scan when they injected the stuff had a look of surprise that it didn't cause me pain.

So off to the surgeon for a consult and to set up the surgery. He too kind of shook his head when I explained my pain. He said to me, I think there's more going on than just a gallbladder not working properly. When I get in there hopefully I'll see what else is going on.

So I had the surgery done, went home the next day. Felt okay, then the following morning I woke up screaming in the worse pain I have ever felt. It was worse than labor pain. It felt like someone was stabbing me in the shoulder. Any movement on my part made it worse. Back to the hospital I went. First test they did praise God showed the problem. They did a bilary scan and the clips they used had all been blown off. The reason for that was my sphinter of oddi was very tight and wouldn't let the bile flow, so it backed up and blew off the clips. Here I had bile flowing where it shouldn't have been.
(the clips blowing off is something the Dr said you read about in med school but most likely will never see with a patient, he smiled and said well you are one in a million)

First thing the surgeon said to me was, NOW we know what was causing all your pain. Its weird that although my gallbladder wasn't working right, it was the sod that was causing my pain. No regrets about it coming out though because pathology did show it to be very diseased and full of scar tissue.

So another Dr. did a procedure where they put stents in to open it up but mine wouldn't hold the stents. So he had to cut the muscle to let the bile flow. Time will tell how well I do, overall I'm okay. I can eat pretty much what I want. Though I did for 2 mths eat very carefully then slowly add foods with more fat in them.

I know this really isn't what you were asking about, but it was so hard for me to find anything on SOD, so when you mentioned it, figured I would tell my story. It is REAL, no doubts about it. Just because not many suffer from it, alot of the Dr's don't know about it therefore to them its not real.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

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rozbel,

I'm sorry to hear that you're still having attacks. Do they only come when you eat something fried/fatty? I keep hearing about a product called Cholacol, which I may look into if my system doesn't get back to normal. A lot of people swear by it! I've also been reading up on magnesium deficiency and biliary dyskinesia, so I'll be checking into that too. I'm sure I'm deficient, especially with my diet lately. And my multivitamin doesn't provide the 100% RDA. So I'll be picking some of that up too. It can't hurt!

Tomorrow is my first follow-up with the surgeon since my surgery. I'll tell him about my little attacks after the pizza and the muffins, since HE is the one that said, "Oh yeah, you can just go right back to your regular diet like nothing ever happened.". Yeah, right! I've just come to the conclusion that docs don't care so much about solving problems like we have b/c they can just rip out the GB. Then if you have a problem, they just say that they don't know what could be causing it. So frustrating.

Last edited by moderator4; 07-04-2008 at 10:02 PM.
Reason: Quote is unnecessary.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

Tazzie,

This is what scares me! IF I were to have something like this, I will probably be hard-pressed to find a doc that believes that this condition exists. But, I'm not one to lay down and let the medical community brush me off. My persistence is how I got my GB out within 2 months of my first doctor's visit. I had an ultrasound, upper endoscopy, then the Hida scan. It was all very quick, especially when I read about people that go for months and months before getting referred to a surgeon. So, I'm ready to be my own advocate if the situation calls for it. Lord, I hope that that's not the case, and that my system gets regular. Like I said, all I read about is people having diarrhea problems after GB removal, and most of the time, that gets straightened out. I never read of people continuing to have what feels like GB attacks after surgery, only for them to go away forever. I'm going to talk to my surgeon tomorrow and ask him to explain to me how the bile duct changes once the GB has been removed. I'm going to tell him about Titchou's analogy (post #2 in this thread), and see what he says. I don't know that I'll put a lot of stock into his response, considering he told me to eat whatever I wanted right after surgery, but still, I'm curious. He should at least know how the bile duct acts after GB removal. I guess. Who knows.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

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Hi Nikki,

I hope you get more out of your Doctor. I only get more info from my Doctors after I specifically mention certain items, THEN they start taking the time and fill you in with the info you need in the first place.

Interesting thing about the magnesium. Why is there a deficiency and how do you take for supplement?

Did you get MRCP done prior to the surgery? It's supposed to help you find small stones/sludge and determine if the surgery is necessary.

Last edited by moderator4; 07-04-2008 at 10:08 PM.
Reason: Quote is unnecessary.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

Quote:

Originally Posted by AlanPi

Hi Nikki, I hope you get more out of your Doctor. I only get more info from my Doctors after I specifically mention certain items, THEN they start taking the time and fill you in with the info you need in the first place.

Interesting thing about the magnesium. Why is there a deficiency and how do you take for supplement?

Did you get MRCP done prior to the surgery? It's supposed to help you find small stones/sludge and determine if the surgery is necessary.

You can buy magnesium at drug stores, GNC, etc. You can do a search (internet search) for magnesium deficiency, and you'll come up with lots of things. I searched for "magnesium deficiency" and "biliary dyskinesia" and read quite a few interesting articles.

I agree that you get more info out of docs when they know you've done your research and know what you're talking about. Prior to this surgery, my surgeon didn't mention any of those things (sphincter of oddi, etc) as being a possible problem. But today when I mentioned it, he didn't "poo-poo" the idea that it does happen. That was a MAJOR relief. I was terrified of going thru numerous docs in attempt to find one that would take me seriously. I'm counting my lucky stars right now.

I didn't have an MRCP done. My surgeon told me this morning that the pathology report showed no stones in my GB, just major inflammation. I told him that I've had 2 attacks since surgery, and told him that I'd read up on Sphincter of Oddi. He said that if I continue to have trouble, they can send me for an MRCP, so we'll see. I was relieved that he didn't blow me off. I've read several stories where patients ask about Sphincter of Oddi, only to have their docs blow it off as if they are crazy. I'm glad my surgeon told me that it is a possibility, and that I can get treatment for it.

For now, I'm going to just give my body time to adjust. I still have a ways to go before I start pushing for an MRCP or an ERCP. So, I'm going to take it slow. I'm going to slowly try different foods - just a teeny bit at the time (NO pizza, no fast food, nothing really greasy), and just see what I can tolerate. If I'm able to tolerate certain things, I'll increase the portion the next time I eat it, and see how that goes - and just go from there. For right now, I'm going to keep my foods as safe as possible and give my body time to settle down. I think that in another 3 weeks or so, I'll start trying some no-no foods in TINY portions. I'll be 1 month post-op by then.

The doc told me that I need to try to give it a year. A year? I hope I'm back to normal by then, lol. I told him that I'm down to a size 3 in pants, and that if I drop to a size 1, something will have to be done, otherwise, I'll be shopping in the girl's department with my 11 year old daughter. I already look sickly as it is. I'm actually shocked that I haven't lost more weight than I have.

Have you had an MRCP, and if so, what's involved with that? I haven't really looked into that procedure too much. I've read more on ERCP than on MRCP.

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

Quote:

Originally Posted by nikkilewis

MRCP

I didn't have MRCP yet, but I will try to request one before I have cholecystectomy.

Not try to get you worried, here are some info about both procedures:

ERCP should be done before surgery if gallstones are present.
Failure Rate 10%
Morbidity Rate 1~7%
High probability (50%?) of getting painful pancreatitis from ERCP, should only be done by VERY experienced specialized surgeons.

Just like you, I have dramatically lost weight since my gallbladder/digestive symptoms worsened. I plot my weight every day and see that recently, it has been a gradual decline, probably due to healthier diets. I find that knowing (somewhat) what's going on with your body, adjust to it, and finding supports on message boards such as this one will help you relax. Once you are relaxed and learned to live with it, you won't notice many of your bother some symptoms any more. I know so because my daily diary indicates that to me!

Re: Who had GB attacks after GB removal, and had them go away after body adjusts to n

Yeah, the ERCP does worry me. There are a lot of risks to it, and that's definitely NOT something I want to jump into. I've read stories wehre people are worse off AFTER the ERCP than they were before having it done. For now, I'm just gonna relax. Heck, I'm only 9 days out from getting my GB removed, and all I'm doing is borrowing trouble when I start worrying about SOD problems. I can't help but think about the "what if's", but I think I'm NOT going to keep reading up on SOD. It's pretty depressing, lol. I may look into it again sometime down the road, but after the things I've read today, I think I might just be better off w/a low-fat diet forever. I can't post links here, but I found a page with nothing BUT horror stories about ERCPs. That freaks me out enough to make me stop reading and just try to relax for now.